TNM staging not accurate?

[emily]

Hi gqmom,

I don't post often but just wanted to reply to your post. The TNM staging system tells you about the size of your tumor (T), the number of nodes positive (N) and whether there are distant mets (M). It's not really telling you anything about the biology or histology of your tumor. The grade which is based on various scales, but usually the Bloom-Richardson scale will tell you this. When doctors tell you about the likelihood of recurrence they are usually basing this on statistics that apply to large groups of women with similar stats to you. Because Herceptin is a relatively 'new' treatment it may not be factored into some of these recurrence stats that are around e.g cancermath.
It's perfectly reasonable that you would ask these questions of your doctor. Many of us have done so, probably the majority. Each one of us live with our own set of questions about our individual circumstances. There's no absolute answer of course but the more information we gather the stronger we become. Best wishes to you.
Emily

[Debbie L.]

Wow, this got me to thinking. Thanks to both of you.

First, to answer gq's question about TNM -- I wouldn't say it's "not accurate" but that it's just one part of the information that is taken into consideration. Long ago, before we had any details of cancer biology to consider, it was all they had. But now, other factors of biology (grade, ERPR, HER2, angiolymphatic invasion, Ki67, etc) are thought to make a bigger difference to both best treatment choice, and to outcome. But TNM still has an effect on prognosis also -- I have not seen anything to say that it's irrelevant, certainly.

Most studies and statistics that you'll see quoting bad news for ERPR- and/or HER2+ are from before there was Herceptin. The ones that take H into consideration seem to show that H levels the playing field, or even gives the advantage to HER2+, so that being HER2+ is considered good news (hard to label anything about cancer "good news", but you know what I mean).

Each person has a different style as far as dealing with the emotional, scary bits of a cancer diagnosis. Some do not want to hear ANY statistics of chances of recurrence and do not ask many questions -- just following their provider's advice and getting thru it. That's fine and normal. I would agree with Emily that information can make us FEEL stronger, but that is not necessarily true for all of us. Especially if we're in the hands of competent providers.

Others of us (probably most on this list, as by definition we're usually here because we're asking questions) want to know everything that is known. I don't know exactly why we're this way, but perhaps it has to do with giving us the illusion of control, to gather our information. I think that's fine and normal too -- just a different style.

But Amy, your question, and the clever way you frame it! You're right, of course. No one, cancer diagnosis or not, knows these things for sure. I totally get your point, and I did and do "use" the motivations you mention to try and be in the moments of my life. But at the same time, I gather information (obsessively?) about all cancer details including prognosis. At 11 years out, I've let go of that obsession for myself personally but I still have the interest, and frankly never thought to question why we want to know, nor did I ever think it abnormal that people DO want to know what is known. Thinking, thinking. Amy, do I have your permission to quote what you said, to another list where there's a knowing-your-prognosis thread? I won't use your name.

Debbie Laxague